Managing Bronchiectasis

[Mustardfan]

Has anyone got any tips on managing bronchiectasis? I’m asking because in my experience, the NHS doesn’t always have all the latest information about managing health conditions. I’ve had chest physio advice on how to clear mucous from my lungs. The advice is to do the breathing and huffing cycles while sitting, however I’m finding that I can bring up more mucous if I adopt different positions including lying down, bridge and lying on my side, and do hypopressive breathing. I’ve just started taking carbocisteine, prescribed by a consultant who I’ll see again in 6 months time. He said take two twice a day. This seems to be helping me bring up more mucous. I’ve now started working on bringing up mucous before bed as well as first thing. I’m wondering what the optimal dose is, I see the packet suggests some people switch to one four times a day? I often go to the gym for a 30 min workout, which also helps bring up mucous. Does anyone know how long the carbocisteine takes to act, and how long it lasts? Anyone got any other tips or advice? Thanks.

I recently read a study which recommended a few minutes of vigorous singing daily to help COPD, might work for bronchiectasis too?!

I have one who has this. They use hypersaline nebuliser while doing breathing/huffing exercises laying on their side with an arm over their head. That’s what the hospital physio had them do. They have a little gizmo that connects to the nebuliser line where they have to endure the ball gets to a certain level when they huff.

Google a bronchial harmonica but also I saw this when looking myself!

www.asthmaandlung.org.uk/groups-support/harmonica-lung-health

I was diagnosed with this 6 years ago. I believe my lungs were damaged by severe chest infection 20 years earlier. I had a CT which showed "possible unusual infection".
I was given a few weeks of doxycycline, carbocisteine and discharged.
I had to have surgery a year later (unrelated) and the surgeon arranged a chest physio who gave similar advice.
I found I got the best results by far by laying flat on my back. I never found the carbocisteine helped much but I took 2 a day for three years.

I was hospitalised with covid in 2021 and given a cocktail of drugs which, once I recovered, seem to have cleared some long standing infection and I no longer have mucus.. I stll have bronchiectasis because that's the structure of the lung damage but only really have problems when I catch a virus.

That’s amazing that you no longer have mucous. There seems to be a lot for me to clear every day.

Thanks, I’ve wondered about a nebuliser. I’ve also seen some kind of pipe you can get to inhale saline solution. Did they get the nebuliser from the NHS?

Thanks, I might give that a try, or join a choir, though I’m putting my time right now into getting to the gym and I don’t think I have the time for a choir as well. I’m not very good at singing.

I’m continuing to bring up what feels like a lot of mucous. I do breathing exercises for 20 minutes before bed, and did them for 35 minutes this morning. I also brought up some mucous after a brisk walk today, and now while having a hot drink am also bringing some up. I was told that I only have mild Bronchiectasis, I can’t really understand why there’s so much stuff in my lungs.

Might it be worth seeing a respiratory physio - privately if you need to? They could advise on whether something like an Aerobika might help.

I had a long course of Azithromycin which worked really well, plus the carbocysteine and inhalers.

Make sure you have an agreement with the doctors/respiratory department at the hospital if you feel like you have a chest infection. I have antibiotics I have at home that I can take straight away. I have an agreement that I can submit a sample if I think I have one. I just cough more and can get more breathless. I know when I have an infection because I loose my appetite.

Make sure your work knows. I have an agreement that I can work from home if I think I have an infection.

The one side effect is that I get more breathless easier. I will not be having a third child because I do not think my lungs can cope with it as there are certain drugs I can not take

I wonder if you have some infection? I suspect that if you have brochiectasis there are some infections that linger and GPs don't always recognise them. I'm convinced I had some infection for years but the GP just kept increasing my asthma inhalers. It was an IV antibiotic in hospital that conquered it I think.

thanks, ive been wondering if I’ve got an infection. I finished a course of antibiotics in mid December. A week later I bought up a small green mucous plug, I started the carbocisteine that day, as I feared I had another infection. I also bought up a brown mucous plug a couple of days ago. The rest of the mucous is clear. I wonder if it is an infection, whether my body could fight it without antibiotics?

It's a feature of the disease

You need to provide a sputum sample to your GP. People with this condition can become colonised with various bugs and if this is the case you will need an urgent referral to a Consultant. Please go to Asthma plus Lung UK website for some very comprehensive advice re managing your condition. I am happy to talk further via private messaging

Thanks, I’ve looked up the aerobika. It could be something that might help. I saw a private physio and previously, and the NHS physio was much more helpful and in depth.

Thanks, I do have a sample bottle and can take a sample in, I’m just a bit hesitant as I’ve only just had antibiotics and I wonder if I should wait to see if my body can fight it. I’m not coughing. I have t got any problems with breathlessness.

Thanks, I’ve wondered about a nebuliser. I’ve also seen some kind of pipe you can get to inhale saline solution. Did they get the nebuliser from the NHS?

Im not in UK but we pretty much have similar systems (I worked for NHS for years). We buy the nebuliser machine and the hospital system provides the hypersaline nebules for use in it. The hospital system also provided the equipment to go with the nebuliser for the exercises to do when nebulising (where your huffing needs to make the ball move a certain distance). Basically anything not commercially available they provide.

Re sputum sample, mine gets that done by respiratory physio’s at the hospital. They get them to do coughing exercises and put a tube down and get sample from that, it’s really not their favourite thing to have done, seemingly very uncomfortable, but gets the sample from where it’s needed.

If I can join you ladies..
I suffer from Allergic Aspergiloses. My lungs are full of thick mucous plugs and I can not get them out no matter what I try! Last time they did CT scan in 2017 it showed bronchiastes and plugging.
I had a chest physio but the exercise doesn’t work for me. All ever worked was a course of prednisone which now seems I’m immune too and if I would take my usual dose of 40mg, it doesn’t do anything. I’m literally at the wits end.
Also I’m not under any consultant now, they discharged me as I was doing pretty well, as I only had flare up every 2-4 years.
Now I have a bad one.
I just got myself a new nebulisor to see if it helps?
Any other tips? Also I visited GP few times in December about this, but they seemed not interested to re refer me back to clinic.
I can’t see how long I can self manage it.
I was given Amoxicillin and Prednisone but it did nothing this time.

When I cought, it gets very chesty sound, like with very rattled noises inside, almost I would think the plugs are coming up, however they never do so I cough badly and very heavily to the point of peeling myself. Now my lungs are on a fire, so sore, can’t eve n breath..
Wehn I visited the GP and she listened my chest, she said my chest is clear! So I said how come I can hear those loud noises and wheezes and growling she said awww that’s just the mucous rattling around.
Im actually got into panic I got plastic bronchitis as the plugs I used to have looked like a tree branches. I am honestly so scared I will choke on those or my lungs collapse cos of this.

Sorry to hear that. I think I would be asking the GP again for a referral back to a specialist and insisting on it. Do you take carbocisteine? I’ve been prescribed that I’m bringing up a lot of mucous now. Are you able to exercise? I bring up a lot of mucous when I exercise, like the stairclimber at the gym, the exercise bike, rowing machine and swimming. You sound like you might be feeling too rough to exercise, however it could help, even a simple walk up a hill. Do you have acid reflux? I think that controlling my acid reflux has really helped me. You might find the book, the Chronic Cough Enigma helpful. I e come accross this YouTube channel:
https://m.youtube.com/@BECLEARwithbronchiectasis

I was given Carbocisteine before but it never made any difference, if anything I felt more wheezy on it.
How much do you take?
I do walk about 4 miles together back and to work per day and in summer I biking to work however my bike is now broken and atm I have not spare money for a new one so will leave biking for warmer months.
I did contact GP last week and but they just didn’t seem bothered at all.
It’s a nightmare really.
I was up whole night worried I somehow hurt my lungs yesterday as I tried to cough really hard and nothing would come up, all it did made my lungs so sore, it felt like my heart was nonstop pounding too. It’s a bit better now..

@Lungsonfire There is a right way and a wrong way to cough up the phlegm.
Google chest clearing exercises. You will find lots on Youtube by physios who show you how to move the mucus up the lungs with breathing exercises before coughing to clear.

You said the physio never worked, did you try doing the mucous clearing exercises lying in your back or side? I usually start mine sitting up and not much happens, after a couple of rounds I lie down, not much comes up the first go, but then when I keep going more and more comes up. There seems to be a difference since I started the carbosisteine more mucous comes up, I think.